Given Dr Lerner and Montoyas findings, why arent a subset of us getting treated now?

These doctors no doubt have a clinical experience-based roadmap in their heads, which I expect is updated as they learn more.

I do wonder wonder, though, whether there is some intrinsic bias in each of these researchers/doctors, that makes them focus on a particular set of viruses or treatments the ones they are most interested in, or have the most expertise on.

For example, Montoya is into herpesviruses, Chia enteroviruses.

You'd want a road map to be bias free.

Click to expand...

Most of our doctors do seem to have their own, um... preferences. I feel there's a large amount of "To the man who has a hammer, everything is a nail" in ME/CFS treatment. I tried to list those docs who seemed to have the most tools in their toolkits (to keep the analogy going).

I suspect that if we could get roadmaps from, say, the four docs I listed, we might be able to combine them into some coherent whole. However, I don't think getting the knowledge those docs use down on paper is in any way an easy feat.

I wonder if we could, by polling patients, find out which tests are commonly run by the top 10 (or 20) ME/CFS docs. The two I've seen both ran many tests, including tests for infections. It might give us a good starting point. Of course, the way they evaluate the results of the tests is also critical. My local GP ran a bunch of tests, but decided there was nothing wrong while my ME/CFS specialists came to different conclusions from similar tests. I think Lyme and herpesvirus tests are particularly susceptible to significant interpretation difference, for example.

I wonder if we could, by polling patients, find out which tests are commonly run by the top 10 (or 20) ME/CFS docs.

Click to expand...

This is a good idea, and we can also ask the patients why these tests were taken, so we can know the rationale behind them.

And the idea is to combine and distill the knowledge that people on the PR forum have on CFS testing and treatment.

My provisional first round of testing would be something like:

Epstein-Barr virus antibodiesHHV-6 antibodiesCytomegalovirus antibodiesHerpes simplex I/II antibodiesCoxsackievirus B and echovirus antibodies (but this can only be done at ARUP, since other labs don't have sufficiently sensitive enterovirus tests for CFS patients and ARUP lab is only in the US, so these leaves a hole in enterovirus testing outside the US). Parvovirus B19 antibodiesChlamydia pneumoniae antibodies

Tests for anemia and hyperthyroid might also be taken at this stage, to rule them out.

Then, from the results of this first round, if you were strong on the herpesvirus infections, at this point the roadmap might direct you to anti-herpesvirus treatment. Or if you were strong on the enterovirus infection, then trying oxymatrine might be advice given (except in the case of people with autoimmune tendencies, as I believe Chia found oxymatrine does not go well with these patients).

If you have high parvovirus B19 antibodies an nothing else, great, you just take IVIG, and likely go straight to the finishing post, winning the "game". If you have Chlamydia pneumoniae, then appropriate antibiotics would be suggested, and if this is your only infection, then again, you are likely go straight to the finishing post, winning the "game".

This sort of advice is useful because not everyone can afford to go to a good CFS doctor, or there may not be such doctors in their own country or location.

If nothing was found in the first round, or if additional infection possibilities are to be explored, then the second round of testing might be:

HHV-7HHV-6 variant A (if in the first round you had high HHV-6, then you might want to test to see if you have the nasty A variant of HHV-6)Varicella zoster virusMycoplasmaToxoplasma gondiiCoxiella burnetiiHTLV I and II (if living in an endemic area, like Florida)Ross River virus (if living in Australia)

At this stage you might also want to get a full digestive stool analysis, and perhaps a leaky gut test, to see if you have any particularly problematic bacteria in your gut, and see if you have a problem with intestinal permeability.

But ideally you'd want to confer with one or more of the CFS/infectious disease doctors when devising such a roadmap. There may be certain symptoms that hint that specific pathogens are present, which should prompt you to test for that specific pathogen initially. For example, parvovirus B19 I believe can cause a butterfly rash, Lyme has the bullseye rash.

Ok, I didn't read this entire thread but the word "roadmap" has popped up several times.

Just FYI, the IACFS/ME {International Association for CFS/ME}, which is an international organization for clinicians, researchers and includes Peterson, Klimas, Montoya, Chia, and a bunch of other well known people in the field, are putting out a primer on diagnosing and managing CFS/ME hopefully next year.

The money won through Chase Community Giving will be used partially to disseminate the primer.
Patients and caregivers can also join IACFS/ME.

This is an excellent "roadmap" IMO. I wonder if we can post this somewhere. Even someone waiting for a doctor's appt can get some of these done ahead of time through direct labs, anylabtestnow etc. I wish I had this list 10 years ago

This is a good idea, and we can also ask the patients why these tests were taken, so we can know the rationale behind them.

And the idea is to combine and distill the knowledge that people on the PR forum have on CFS testing and treatment.

My provisional first round of testing would be something like:

Epstein-Barr virus antibodiesHHV-6 antibodiesCytomegalovirus antibodiesHerpes simplex I/II antibodiesCoxsackievirus B and echovirus antibodies (but this can only be done at ARUP, since other labs don't have sufficiently sensitive enterovirus tests for CFS patients and ARUP lab is only in the US, so these leaves a hole in enterovirus testing outside the US). Parvovirus B19 antibodiesChlamydia pneumoniae antibodies

Tests for anemia and hyperthyroid might also be taken at this stage, to rule them out.

Then, from the results of this first round, if you were strong on the herpesvirus infections, at this point the roadmap might direct you to anti-herpesvirus treatment. Or if you were strong on the enterovirus infection, then trying oxymatrine might be advice given (except in the case of people with autoimmune tendencies, as I believe Chia found oxymatrine does not go well with these patients).

If you have high parvovirus B19 antibodies an nothing else, great, you just take IVIG, and likely go straight to the finishing post, winning the "game". If you have Chlamydia pneumoniae, then appropriate antibiotics would be suggested, and if this is your only infection, then again, you are likely go straight to the finishing post, winning the "game".

This sort of advice is useful because not everyone can afford to go to a good CFS doctor, or there may not be such doctors in their own country or location.

If nothing was found in the first round, or if additional infection possibilities are to be explored, then the second round of testing might be:

HHV-7HHV-6 variant A (if in the first round you had high HHV-6, then you might want to test to see if you have the nasty A variant of HHV-6)Varicella zoster virusMycoplasmaToxoplasma gondiiCoxiella burnetiiHTLV I and II (if living in an endemic area, like Florida)Ross River virus (if living in Australia)

At this stage you might also want to get a full digestive stool analysis, and perhaps a leaky gut test, to see if you have any particularly problematic bacteria in your gut, and see if you have a problem with intestinal permeability.

But ideally you'd want to confer with one or more of the CFS/infectious disease doctors when devising such a roadmap. There may be certain symptoms that hint that specific pathogens are present, which should prompt you to test for that specific pathogen initially. For example, parvovirus B19 I believe can cause a butterfly rash, Lyme has the bullseye rash.

Just FYI, the IACFS/ME {International Association for CFS/ME}, which is an international organization for clinicians, researchers and includes Peterson, Klimas, Montoya, Chia, and a bunch of other well known people in the field, are putting out a primer on diagnosing and managing CFS/ME hopefully next year.

This is an excellent "roadmap" IMO. I wonder if we can post this somewhere. Even someone waiting for a doctor's appt can get some of these done ahead of time through direct labs, anylabtestnow etc. I wish I had this list 10 years ago

Click to expand...

It needs a lot of fleshing out. There needs to be specific advice on which antiviral / antibiotics, etc, to use, the web addresses of the recommended testing labs (for various English speaking countries: US, UK, Canada, Australia, maybe South Africa).

Plus there needs to be some basic information on how to interpret test results, that covers things like viral latency and reactivation, when and why a detected infection is significant or not, and so forth.

There needs to be details of important adjunct protocols like B12/magnesium, methylation protocol, Th2 to Th1 immunomodulators, leaky gut protocol.

The longer one has cfs the possibility of more co-infections. As SOC mentioned we need to keep finding stuff for our immune system, then a broad spectrum antiviral like famvir or valcyte to get at the herpes viruses. Most bacterial infections implicated in cfs can be treated with doxycycline and or azithromycin, these can help with bacterial gut issues but flagyl and rifaximin are more commonly used. In KDM's latest lecture he mentions bacterial gut infections can cause immune dysfunction, so treating them can help improve immune function. With antibiotics theres a risk of fungal/yeast infections and nystatin is sometimes recommended with abx and after abx course is finished definately probiotics or antifungal like diflucan or nizoral. From what alot of cfs doc say, testing can be unreliable or infections go intracellular or are within the nervous system and not picked up in blood tests.

good nutrition and antioxidants etc as well as symptom mangement should be started from the beginning. I think eventually they will find that long term cfs patients are a soup of different infections. We need one big pill with everything in it, but it would be the size of a hockey puk, lol

6. Normal cellular isoform of prion proteins (PRIONS) --PrPc--as this is something that has implications and is found to be abnormal in a percentage of us.

Sushi

Click to expand...

Thanks very much, Sushi. Nice list. If you can, would you give some reasoning for these tests why they are used I'd really appreciate your input.

It occurs to me that tests included in a roadmap should primarily be there to determine the path of treatment. So for example, testing or parvovirus B19, if it comes out positive, will directly lead to the roadmap suggesting you to go on the path of IVIG treatment.

I guess the methylation panel from Health Diagnostics is self explanatory: if you are low on methylation, the the path yo should take is the methylation protocol (please correct me if I am wrong).

Lyme spectrum test is to rule out (or in) Lyme disease.

Inflammatory cytokines: might I guess this can help you select properly targeted anti-inflammatory herbs? But I am not entirely sure of the purpose of this test (apart form its huge research value) in terms of treatment selection or tailoring, so if you could give some examples or ideas on how the results of such a test might be used to help choose the right treatment path, I'd be most grateful. The good thing about a little project like this roadmap idea is that we can learn stuff from each other in the process.

Similarly for the immune function tests, ANaerobic stool/digestive test, and normal cellular isoform of prion proteins (PRIONS) --PrPc--. I don't really know much about the clinical purposes of these tests.

That's not to say that a roadmap cannot include some more research oriented tests; but it's main goal I would suggest is to guide people onto the most appropriate treatment for them.

From what alot of cfs doc say, testing can be unreliable or infections go intracellular or are within the nervous system and not picked up in blood tests.

A treatment trial of a medication can also be a diagnostic tool as well, which i think they do alot for lyme.

Click to expand...

That's true. So there should also be some advice on doing empirical testing: that is to say, taking an antibiotic / antiviral / antifungal and seeing if you feel better; in which case this may provide evidence that you have an infection that has not been detected by normal testing.

Of course, most drugs have multiple actions doxycycline is a good MMP-9 inhibitor as well as an antibacterial, for example so you can't always assume that if an antibiotic helps, it is due to its antibacterial action. I do of lot of empirical testing myself, though. It's fast and direct. When something helps me, I start to wonder why, and that often leads to me learning something new.

Thanks very much, Sushi. Nice list. If you can, would you give some reasoning for these tests why they are used I'd really appreciate your input...

I guess the methylation panel from Health Diagnostics is self explanatory: if you are low on methylation, the the path yo should take is the methylation protocol (please correct me if I am wrong). Right, to see if there is a problem and as a baseline for treatment.

Lyme spectrum test is to rule out (or in) Lyme disease. Yes, both for treatment of possible Lyme and also because Lyme infections can make some treatments less successful.

Inflammatory cytokines: might I guess this can help you select properly targeted anti-inflammatory herbs? But I am not entirely sure of the purpose of this test (apart form its huge research value) in terms of treatment selection or tailoring, so if you could give some examples or ideas on how the results of such a test might be used to help choose the right treatment path, I'd be most grateful. The good thing about a little project like this roadmap idea is that we can learn stuff from each other in the process. Some treatments can increase inflammation, so if you have high inflammation you might want to treat it beforehand to have a better outcome. I think inflammation can also go with oxidative stress. (someone confirm?)

Similarly for the immune function tests, Certain treatments can modulate the immune system so it is good to know what is happening here. Like whether you have a shift to Th 2 ANaerobic stool/digestive test, Some significant gut infections (which need treatment) won't show up on a stood test that is exposed to oxygen. and normal cellular isoform of prion proteins (PRIONS) --PrPc--. I don't really know much about the clinical purposes of these tests. Determining the integrity of the proteins on the cell surfaces (they can be abnormal and misfolded) can tell a doc whether this needs treatment. And, as some prion abnormalities are contagious, it is good to know whether yours are normal or not.

That's not to say that a roadmap cannot include some more research oriented tests; but it's main goal I would suggest is to guide people onto the most appropriate treatment for them.

At this stage you might also want to get a full digestive stool analysis, and perhaps a leaky gut test, to see if you have any particularly problematic bacteria in your gut, and see if you have a problem with intestinal permeability.

Click to expand...

Where would one go to get tested for leaky gut syndrome in the US? This is not something a traditional MD would know about or be able to run, would they? I am trying to find a specialist in this area but don't know how to begin the search.

I love the idea of the patient community working on a road map for our illness for testing .. which then would lead to subgroups and treatments. If the knowledge of ourselves and our speciaists could be put together.. it would be a great guide esp if made so its simple to follow.

Another thing which tests should be done for (probably at the same time as lyme testing if one is where lyme is... is for other tick illnesses as well eg Rickettsia is a very common one in Australia. My CFS specialist found half his patients had that show up on testing).

Back 7? years ago.. I came across a ME/CFS step by step treatment plan online (which a patient had put together) and that gave me so much hope as suddenly I had an easy plan to follow, could see what tests I'd missed etc etc. That was by lassesen. I just tried to find the one from years ago which was very very easy to follow due to how it was set up but now cant find that one.. but found another of his http://lassesen.com/cfids/idefx.pdf (thou in this form its hard to follow as not in step by step plan)

(using left part of the screen which has headings.. if you go down to the part that is "For MDs and RNs" at the link above, there is part of a path to follow there including tests .. and down further from that is a part "First Tests" with a link for each treatment protocol.. that section isnt based experimental treatment but rather ones doctors will do based on test finding so one most of our doctors would be okay to do.. after that point one goes into the Experiemental things)

I suggest if anyone started a road map.. this all would be a good starting point (and there is permission to copy it all).

Where would one go to get tested for leaky gut syndrome in the US? This is not something a traditional MD would know about or be able to run, would they? I am trying to find a specialist in this area but don't know how to begin the search.

I think this is a fantastic idea, and could help get alot of people better, especially those who get this illness new, and dont know where to start. It took me that last two and half years just to get my head around the problem and decide where i should start.

anyone got access to some flowchart software? Preferably something that can be put on a website easily, maybe with SVG so that its scalable, because i imagine such a roadmap will get quite large. There are some free ones out there too, and even MS Word can be made to display flowchart blocks.

I dont mind using MS Word or trying to find something better to build one, if no one has something better and easier to use to hand already.

I have started to collate the data talked about here, focusing primarity on what tests to do. Once we have that framework for that in place, we can add treatment options, and the other details: Reasoning for a test, where to get tested and how to interpret results.

So, as HIP says it should start with a diagnosis stage (i.e. rulling out other diseases), then different stages for different types of diseases. Ideally, so that people can skip one stage for another if they think it is more applicable to them. But i suggest we put it into an order that we think is most likely.

For stuff like herpes viruses, we could display also how common they are (60% of patients have this) and stuff like that - some things will be easier to get the data for than others, but we could always run polls on the site to get the data we need.

We shouldo also give higher status to things that are rare but cureable, because although you may have only a 1% chance of having it, its worth testing because if you do have it you could make a very good recovery with the right treatment.

We will need to constantly update the roadmap as we learn more and get feedback on what is and isnt working, but there is enough knowledge out there to paint a better picture of what to try and how. Obviously the roadmap gives no guarentee but it provides our best info on what works at the current time. Certainly some people do seem to get better and probably they just get lucky finding the right thing for them. This roadmap is a luck collector really - it increases your chances of finding the right thing and treating it.

heapsreal's point about some tests being unreliable for various reasons, needs to be addressed to - a negative test might mean you probably dont have it, not that you definately do not. and empirical testing can be worth a go, especially when a test is hit and miss or expensive compared to the treatment, and if the treatment is unlikely to make a patient any worse. So people have to make up their own mind on whether to treat despite a negative test, and we can help by flagging those that we know are prone to false negatives.

Ideally each block on the flowchart would be clickable for more info: reasoning for the test, liklihood, where to get the test, etc.

OK, here are some basic mockups. Its just to get an idea - we can and will move things around - I think that is going to be the most difficult thing; to decide on the best order of things.
I can add in hyperlinks to take us to pages where more details can be viewed, but im not sure at the moment where we could put that data. We could create lots of pages on PR somehow? A wiki would be ideal - Does PR have one already?

As the charts will get quite big, i plan to save them as SVG files so that they can appear on the site and are easily scalable. So people can zoom in and out of certain areas, but it can all be on one chart on the screen. Though we may want to still keep the main chart and the exclusion chart seperate?

Im happy to build the proper chart if no one else wants to do it, but i need everyones help to agree on an order and to get the other data, which tests, where, analysis of results, etc.

I wonder, given what's known about NKC function problems, if immune testing and possible treatments should be the first step. Or at least in parallel with other treatments. Perhaps improving immune function would clear up some of the infections we struggle with (and healthy people don't).

Before we reinvent the wheel, do we have any access -- or even basic understanding about -- the IACFS/ME diagnosis and treatment document-to-be that Hope123 mentioned at post #23? My guess is that herpesvirus treatment is going to be hard for them to advocate to physicians in general without better published info than we currently have. I could be wrong, though.

This website I am working on is only partially completed, and more information needs to be added. It should also probably be spread over several web pages, not all on the same page as it is at the moment. I'd love to get some feedback, criticism and suggestions on what is there so far. Remember, it mainly designed for "beginners" into the world of CFS.

Later, the content can be copied or move elsewhere, like onto this PR site.

However, please continue with your flowchart, snowathlete. It might turn out to be a better format than mine.

By the way, if anyone has a good list of testing labs (pathology labs) in the US, Canada, and also Australia, please post them here. I mean good testing labs for viruses, heavy metals, cytokines, etc. I have a list of labs in the UK already (though some more might be useful too).

Or if you just know a single good testing lab, please post it.

Also, if anyone knows about titer levels in viral and bacterial antibody testing, please give some advice. I'd like to know when EBV, HHV-6, etc titers are considered positive.